Covid-19 has resulted in challenges for most of us due to the social distancing rules. But what is the impact on the estimated 850,000 people with dementia in the UK?
People with dementia need to do things regularly to keep refreshing their memory. Social contact, stimulation and routines are important for helping them to maintain their existing skills. In Yorkshire and the Humber, there are 67,630 confirmed cases, 8,000 of them in Leeds. Data from the dementia studies department at Bradford University shows show that 71.3 per cent of those aged 65+ have a dementia diagnosis; the national ambition being 67 per cent.
Dr. Claire Surr, professor of dementia studies at Leeds Beckett University, explains why social interaction is so important for someone with dementia:
“Research shows that the more socially engaged someone with dementia is, the better they can cope. Loneliness impacts their wellbeing quite quickly. The individual develops more neural abilities to cope [the more they are socially engaged] and their symptoms are slowed.
“[People with dementia can] lose friends due to people’s perceptions [of dementia], with asking the same questions all the time and feeling like they don’t fit in anymore. Others gain friends at dementia cafes to meet people who they do fit in with and have a shared understanding. These are not available at the moment, and people may not remember there’s a pandemic – they can’t go to their coffee mornings, and they can’t understand why we have to socially distance.”
Dementia Friends state that 78 per cent of those with dementia have felt lonelier since Covid-19 due to the social distancing. Alzheimer’s Society provides alternative ways to socialise online, such as their Singing for the Brain service. The singing group is inspired by their research, which shows that music can help those with dementia, as it triggers memories that those songs are associated with. The group is usually held in person but is currently held via Zoom video conferencing software.
Living with dementia is hard under normal circumstances, but particularly so during this lockdown. Wendy Mitchell was diagnosed with early-onset dementia in 2014, age 58. She went on to write a Sunday Times bestselling memoir about her experience, Somebody I used to know. Wendy continues to raise awareness of dementia through her blog, Which me am I today? and through her submissions to Dementia Diaries, an online project where people with dementia can record their reflections. Regarding the current situation Wendy reflects that, “The social isolation, the not ‘doing’ and not being able to communicate on a daily basis in some form will lead many people with dementia to deteriorate quicker.”
Since early April 2020, she has held her own twice-weekly Zoom meetings called ‘Virtual Cuppas with Wendy’. She describes technology on her blog as a “golden light in all this chaos”, as it helps everyone to keep in touch.
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For relatives of those with dementia it has been particularly difficult following the physical distancing rules. Margaret Ogden is a personal and public involvement representative. She cared for her uncle George, 92, before he was admitted into a care home at the end of March 2020. She could only visit him twice a week for an hour at a time at first. However, Public Health England ordered on April 14 that all care homes must close their doors to visitors due to their residents being in a high-risk category for contracting Covid-19.
Care homes are encouraged to engage their residents with video call software on smartphones and other portable technologies to maintain contact with their relatives. But Margaret says that everyone with dementia is different, and can’t always take the advice offered to combat loneliness:
“George no longer has telephone calls, he stutters over the phone due to nervousness as he no longer has the dexterity to dial and it is difficult for him to answer. He doesn’t know how to use the internet so internet resources are no use, especially to dementia patients when they can’t even manage phones anymore.”
However, she says that George is able to still read newspapers and keep up to date with the news on television, showing that those who are not able to use the internet can stimulate their memory in other ways.
NHS Yorkshire and Humber state that over 1/3 of people with dementia in the UK live in care homes. Care homes are having to adapt due to the physical distancing measures, which has made their work difficult to perform. Dr Surr explains why this can be challenging: “Staff wearing facial masks may be frightening to those with dementia who may not understand that there is a pandemic. Home carers may have to prioritise who is most in need, which results in less or even no visits for some people due to fewer staff, or staff may pop in later in the day as opposed to their usual regular visits.”
To those living with the illness, it can seem like they are the lowest priority for the government. As Wendy says, “Once again, we seem to be the forgotten group in so many ways, from those with dementia not being seen as vulnerable, to the lack of PPE in care homes for care workers. Without the support of daily visits by home carers, the strain is even bigger on the lives [of those who care for someone at home]”.
We are all having to adjust to cope with the strain imposed by this pandemic. However for people with dementia, not only do they have to deal with the issues that we all face, but there is the concern that additional skills that they have gained will be lost by the time that the pandemic is over.
The last words are from Wendy: “[That is] my main personal fear: Will I have forgotten how to travel, which I love? Will I have the confidence and ability to speak in public again? Will my speech be affected?
So many ‘maybes’ that none of us will know until we try again when this is all over and for many, sadly, it will be too late.
“Unless we do something every day, we forget.”